The Klippel-Trenaunay SyndromeSupport Group Home PageThe Klippel-Trenaunay Support Group was founded in 1986. The K-T Support Group welcomes patients and their families as members. This World Wide Web site for the K-T Support Group has been established to provide information about the group and about Klippel-Trenaunay Syndrome, and to provide families, adults with K-T, and professionals with links to the group. Click here LINKS to learn more about Klippel-Trenaunay and the K-T Support Group. For more information about joining the group, send an e-mail to ktnewmembers@gmail.com Design Student Asks For Your Help
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2008 KT CONFERENCE DVD ORDER FORMFor everyone who would like to have a record of the 2008 KT Conference, we will once again be recording the Conference and selling DVD's. There will be 3 DVD's (a set) that will record all presentations from the Conference and it is a great reference tool for both parents and physicians.
If you would like to order the DVD's, please print the Order Form below, complete the data and mail along with your check for $40 to: Jodee Craig, 13875 Oak Forest Blvd. South, Seminole, FL 33776. Orders shipped outside the U.S. will cost $45 USD.
Please note: 1. DVD's will be mailed to the above address unless otherwise indicated. 2008 Conference DVD Order Form |
Vascular Anomalies Webcast
From May 1, 2007 at 6:00 PM EDT (22:00 UTC)
Two Printable Brochures OnLine
Print these out as hand outs for your doctors and other interested people.
Informational Brochure
Medical Terms
K-T TISSUE SAMPLES NEEDED:Dr. Qing Wang previously utilized blood samples from our group for DNA research which has been now been published and is reprinted on the K-T.org web site. Dr. Wang would like to do more DNA research on K-T which would involve tissue samples from any of our group members who might be having surgery in the near future. If you are scheduled for an upcoming procedure that would involve tissue removal and would like to participate in this study please email Anil Timura at TIMURA@ccf.org, Dr. Qing Wang at WANGQ2@ccf.org, or call 216-445-0570. Dr. Wang stated that the tissues need to be frozen on dry ice or nitrogen after surgery and shipped with dry ice. If you have difficulty contacting Dr. Wang's team or have questions, please contact Judy Vessey (j.vessey@att.net) or Mellenee Finger (MDF7274968@aol.com). |
Dr. Wang and Dr. Driscoll
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Group Mission and Objectives
The Group's mission is to provide support for K-T Syndrome patients and their families. Our objectives in accomplishing this mission are:
- To act as a support group for sharing experiences and information,
- To provide a clearinghouse for correspondence between members,
- To maintain a list of current medical literature pertaining to K-T Syndrome and to make it available to members and professionals.
Activities
K-T Support Group activities include bi-annual meetings of patients and their families (with medical advisors available to those who wish it) and maintaining a confidential group roster (distributed only to group members). A periodic newsletter of shared experiences is distributed. Campaigns to seek out new members and to make the medical community aware of the group are undertaken, as are distribution of literature and information to members and the medical community. A file of medical literature pertaining to K-T is maintained. Phone support among members is available. Membership privacy is respected.
Affiliations and Tax Status
The K-T Support Group is an Associate member of the National Organization of Rare Disorders (NORD). The K-T Support Group has received notification from the Internal Revenue Service of official status as a non-profit, tax-exempt organization. This means that any gifts or contributions made from the date of incorporation (August 31,1998) will qualify as contributions to a tax exempt organization (i.e a Section 501 (c) (3) organization) for federal income tax purposes.).
The K-T Support Group encourages contributions from members and others interested in Klippel-Trenaunay Syndrome. All activities are funded by and dependent upon these contributions which are the Group's sole means of financial support. Donations are greatly appreciated and put to maximum use in furthering support and informational services. No one is refused admission to the Group for financial reasons, however.
K-T Mailing List
A mailing list was recently established for the Group. To request information about joining either the Mailing List or the K-T Support Group, please click here to contact the Information Coordinator. If you are not currently a member of the K-T Support Group, please indicate that you would like information about joining the Group and about joining the Mailing List.
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I hope to be able to keep these pages updated on a fairly regular basis. If you see anything that needs to be corrected, please let me know so I can fix it ASAP. Page maintained by Skip Meisch,